Self Titration

[Dread]

Okay, I will raise it to 9.

[Rubicon]

This will be an interesting thread to follow. It will show what happens when somebody with poor sleep and no sleep-disordered breathing decides to DW CPAP.

[Rubicon]

Hypopneas are little apneas...

Perhaps a more clever line would have been

Your experiment of 7/17 resulted in a 33% increase in hypopneas over NPSG! WTF, man?

[Dread]

Test

[Dread]

Feel better today oddly enough.

[Rubicon]

Feel better today oddly enough.

How interesting!!

Me too!!

[colomom]

Hello Dread,
While I’m not the expert that many of those previously commenting are, I have had experience with navigating a complex medical system when you are a complex patient who may not fit neatly into a box so hopefully my thoughts may be of some help.

My suggestions to you are:
#1 Providing fuller detail about your medical history would be helpful.
-You mention multiple upcoming appointments with many specialists, what are the reasons you’ve been referred to so many specialists?
-Scoliosis was mentioned, could pain or pain meds be a factor contributing to your poor sleep?
-Your chosen user name “Dread” speaks volumes to me, any history of depression or other mental health issues?
-Any other medical issues or meds that could be a factor?

#2 Step back, take a deep breath and try to stick to one plan for at minimum of 2-3 days. Sounds like your sleep study didn’t show you had significant sleep apnea but like a number of people on this forum your sleep is such a mess that your willing to give CPAP a try to see if it helps, and I can respect that. A possible problem I see is that you’re also getting conflicting advice from people in other forums.
A few hours of barely using the machine isn’t enough to provide a good picture, if I were in your shoes and wanted to give the cpap a trail run I would set it to Palerider’s suggestion and keep it there for 2-3 days without looking at the data or making any changes. Alternatively if you trust the folks at ApneaBoard, set it to the settings they advise and try that for a couple of days.
After sticking with a program for a few days post a few charts for review.

I hope cpap helps you find a restful nights sleep, and if not hope all your docs can figure out a way to get you there. Good luck and sweet dreams!

[Dread]

Hello Dread,
While I’m not the expert that many of those previously commenting are, I have had experience with navigating a complex medical system when you are a complex patient who may not fit neatly into a box so hopefully my thoughts may be of some help.

My suggestions to you are:
#1 Providing fuller detail about your medical history would be helpful.
-You mention multiple upcoming appointments with many specialists, what are the reasons you’ve been referred to so many specialists?
-Marfan’s Syndrome. Im awaiting genetic testing but my doctor suspects I may test positive and could be a lung issue. However X-rays of my lungs showed perfect lungs. The leading cause of death for Marfan’s is bad lungs or aortic valve failure.
-Scoliosis was mentioned, could pain or pain meds be a factor contributing to your poor sleep?
I’ve completely stopped all meds for weeks and still having issues. I only started having breathing difficulties after a dose of 5mg Norco or Hydrocodone and 300mg Gabapentin
-Your chosen user name “Dread” speaks volumes to me, any history of depression or other mental health issues?
Depression, but doesn’t help I’m going through a lot.
-Any other medical issues or meds that could be a factor?

#2 Step back, take a deep breath and try to stick to one plan for at minimum of 2-3 days. Sounds like your sleep study didn’t show you had significant sleep apnea but like a number of people on this forum your sleep is such a mess that your willing to give CPAP a try to see if it helps, and I can respect that. A possible problem I see is that you’re also getting conflicting advice from people in other forums.
A few hours of barely using the machine isn’t enough to provide a good picture, if I were in your shoes and wanted to give the cpap a trail run I would set it to Palerider’s suggestion and keep it there for 2-3 days without looking at the data or making any changes. Alternatively if you trust the folks at ApneaBoard, set it to the settings they advise and try that for a couple of days.
After sticking with a program for a few days post a few charts for review.

I hope cpap helps you find a restful nights sleep, and if not hope all your docs can figure out a way to get you there. Good luck and sweet dreams!

[Dread]

Oh interesting. I was recommend 12 to lower the risks of treatment emergent central apneas.

I will try this.
2-3 days and report back.

[colomom]

-Marfan’s Syndrome. Im awaiting genetic testing but my doctor suspects I may test positive and could be a lung issue. However X-rays of my lungs showed perfect lungs. The leading cause of death for Marfan’s is bad lungs or aortic valve failure…Depression, but doesn’t help I’m going through a lot.

I can relate. My son was strongly suspected of having Marfan’s, turned out he actually has EDS which we later learned he inherited from me
The doctor might suspect you have Marfans, but that doesn’t mean you have it
It’s scary when a doctor suggests something like Marfans and it’s understandable that you’re worrying about heart and lung issues.
I’m not surprised that you’re feeling anxious and depressed, it’s a lot to deal with complex medical issues and physical pain while visiting a sea of of doctors who neither have the time or knowledge to wade through rare complex medical problems.

I hope you’re seeing a geneticist with knowledge of connective tissue disorders and the doctor ordered a full connective tissue genetic panel.

Hope you find some answers and are soon able to find a good nights sleep!

[Dread]

Thank you. Also palerider. Would you recommend setting pressure straight to 20 for max, and then I slowly go from 6 to 6.4 to 6.8, and then I was wondering about start pressure?

[Dread]

-Marfan’s Syndrome. Im awaiting genetic testing but my doctor suspects I may test positive and could be a lung issue. However X-rays of my lungs showed perfect lungs. The leading cause of death for Marfan’s is bad lungs or aortic valve failure…Depression, but doesn’t help I’m going through a lot.

I can relate. My son was strongly suspected of having Marfan’s, turned out he actually has EDS which we later learned he inherited from me
The doctor might suspect you have Marfans, but that doesn’t mean you have it
It’s scary when a doctor suggests something like Marfans and it’s understandable that you’re worrying about heart and lung issues.
I’m not surprised that you’re feeling anxious and depressed, it’s a lot to deal with complex medical issues and physical pain while visiting a sea of of doctors who neither have the time or knowledge to wade through rare complex medical problems.

I hope you’re seeing a geneticist with knowledge of connective tissue disorders and the doctor ordered a full connective tissue genetic panel.

Hope you find some answers and are soon able to find a good nights sleep!

Thank you, it doesn’t help that my dad also passed away so income and insurance is a nightmare/

[palerider]

Thank you. Also palerider. Would you recommend setting pressure straight to 20 for max, and then I slowly go from 6 to 6.4 to 6.8, and then I was wondering about start pressure?

I already gave you my recommendation.

[colomom]

Thank you, it doesn’t help that my dad also passed away so income and insurance is a nightmare/

Hope you have a counselor or someone you trust to talk to. Financial worries, chronic health issues, the passing of your father; that would make anyone depressed.

Hope you feel more well rested this morning!

[Dread]

Here are my latest OSCAR charts from a few days, neatly organized. I haven’t touched the APAP, until guidance because I’m nervous I’ll make the TECSA worse.[img] https://imgur.com/a/793D0qD [img]. The second image is shorter time, I assume first will be more help.